The 5 Minute Shower

I took a five minute shower today, with the shower door open and my oldest running back and forth in the locked bathroom. As I stood towards the back of the shower, I took what was probably the millionth glance at my son to make sure he wasn’t trying to make a run for it, I thought about all the other times I have taken showers like this. It’s rare I get one to myself. Rare that I get a shower in which I can adequately address my backside with Dove and water (it’s hard to do so when you have one foot in the shower, one foot out). Rare that I can even use the restroom by myself without my son in the room with me. I am with my son 24/7 and he cannot be left alone, for any period of time, for whatever reason. He requires constant supervision and it’s tiring.

Shortly after my son was diagnosed, I used to hope that one day the doctors would tell me that it was a mistake and that he didn’t really have Autism. Once I accepted his diagnosis, I hoped he would be one of those who would one day speak. I’m now okay with that no longer happening. Now I just hope that he is one of those nonverbal kiddos with Autism that I can take somewhere without having to constantly hold his hand or worry about him running off and breaking something…or getting run over. I want to be able to let him roam around the house like my youngest in the spectrum, but I cannot do that.

My son is a lot to handle, and a lot of work. I’m overwhelmed. Around the clock care takes a lot out of you. My son has PICA, so he eats everything. He’s nonverbal, so it’s hard to understand what it is he wants or needs and as a result his negative behaviors increase. He’s extremely hyperactive and impulsive, he runs and jumps til he sweats and bolts into the streets. He knocks over things when left alone and is incredibly strong. We have door and window locks and alarms. I already mentioned I can’t go to the restroom or take a shower alone. Everywhere I go, he must go to. I can’t do much of anything else when he is with me, including give more attention to my youngest, who desperately needs the interaction of his parents.

They tell you not to compare, but I do…I admit it, sometimes I do. I walk into the grocery stores and I see the special needs high school students learning he ropes of the grocery business while on field trips and I instantly get sad because I cannot do see a day where Aidan can do that. Not right now. I do not yet see the day in which I’m not called to go on class field trips because Aidan will be too much of a handful. I don’t yet see the day where he gets to walk around the ranch with his other special needs classmates petting animals and riding trains without running away or throwing hay around or trying to eat dead frogs. Where I’m not constantly having to hold him to keep him from running into the street. We didn’t enjoy one bit of field trips because I’m spending too much time holding onto him than we are enjoying it.

You see, my son isn’t like the other kids. He isn’t like the his brother. He isn’t like the other kids with Autism. I don’t need the “if you’ve met one kid with Autism” line, I know this and believe this to be true. However, my Aidan tends to be the only one as severe as he is in the room, and we’ve been in a lot of rooms. The only one I’ve personally met who requires around the clock supervision. The only one I’ve met who cannot even begin therapy for behavior modification because his behaviors are too severe for behavioral modification. Ironic.

I reach out for help but none of it seems adequate because the help comes from those who aren’t living as we do. This isn’t to say I don’t appreciate the help, I really do, and I will continue to ask for help…it’s just hard to get the right help when no one has really gone through this exact situation.

I feel alone in a community that is suppose to understand. How did that happen?

I am off to take another one of those five minute half showers…and cry.

The Un-Prescription for Aidan

Onto my next treatment venture with the kid(s), treating the underlying medical issues that I believe to be the cause of most of their behavioral issues. For myself, also a fellow spectrumite (my word, I coined it, I think, don’t try to snag it, lol), I have always felt that for those with Autism the problematic behaviors were a symptom and not the cause. In other words, the acting out and acting up isn’t Autism but rather the result of discomfort and pain. At it’s core, Autism is a communication disorder, not a behavioral disorder…the behaviors are symptoms of something else, I believe, but not directly connected to Autism.
I have read book after book, attended conference after conference, attended meeting after meeting, e-courses, podcasts, etc and for the past year or so I have focused on the underlying medical issues that our children may have. Up to 70% of those with Autism have GI issues…there are countless studies on Autism and GI. “Ghetto Gut, Leaky Gut, etc.” Symptoms of these issues include, irritability, aggression, property destruction, sleep disturbances, reflux (which has a whole slew of symptoms on it’s own…and also contributes to sleep disturbances), hyperactivity, and so much more. And while many doctors know of such symptoms, they still attribute much of our children’s behavioral issues as Autism. They prescribe antipsychotics for hyperactivity, blood pressure meds for sleep, reflux meds, etc. But what if your child’s problems aren’t caused by Autism itself, but rather an underlying medical issue? At the end of the day, no therapeutic measure I place my child in is going to work if I cannot and do not address these issues (or at least try to). I read in one of the books I’m about to share with the class that we “ask our children to do their best when they feel their worst.” And on that, I wholeheartedly agree.
Now, I’m not one of those that just jump on wagons every time one rolls by, I document every single thing, I observe every single behavior both on medication, off medication, and so on. It’s a process and it takes a long while and I have to deal with and put up with a lot of hard times with my kids in the meantime, but I feel it’s going to be worth it in the long run. What I have found in my extensive, time consuming, mess of documentation is that my child is at his best behaved self when he is sick, when he is completely clear of stool and bloating, and when he was on the GFCF diet. When he is sick, he generally doesn’t eat as much and I figure he isn’t getting constipated as much and therefore the reflux isn’t present resulting in better behavior overall. So what this has told me is that these undesirable behaviors may be tied in with these underlying medical issues. I have sought to address this and I wanted to do so in a way that made sense to me and was easy to administer and keep up with. Do I feel that what I’m about to attempt is a cure or will actually even work? No, my child will still have Autism, I am just trying to make his life easier and free his mind and body from pain and discomfort so he would be better able to absorb what’s being taught to him to give him a better chance at independence in the future. I’m unsure it will work, but I’m optimistic because of what I have seen in those few moments of positive behavior. I connect dots well and it appears that my children can benefit from some GI treatment.
Now that brings me to the overall point of this long post, implementation of such a plan and the documentation of the process. I have stated before that I have read book after book and attended class after class and came up with a parent program (as I call it) that I planned to implement with the assistance of my son’s doctor, then I discovered this book, “The Un-prescription for Autism,” (Dr. Janet Lintala, I got it for 10.49 on the Kindle) and instead of fooling around for a year coming up with a plan that pretty much mirrored what was in this book, I could have just read this damn book. So instead of me just trying to put into words what enzymes, probiotics, and antimicrobials are and their importance and when and why you should give them to your child, I will just suggest you read this book. There is a calendar in which I’m going to follow her plan. I feel more confident in this process because I have come up with something so similar only I had not yet nailed down the administration schedule. I am planning on documenting everything during this process and will do so here, but mostly on my blog.
Now, y’all will know what I’m talking about when I post “Day one, enzymes with DPP-IV” and not look at the computer like, “wtf is she talking about?”
Wish me luck….or don’t, either way, I’m diving in. Stay tuned lovelies.

Shifting Focus…

I have been considering homeschooling, and/or a 40 hr per week intensive therapeutic program…nixing academia altogether for right now and focusing on what I feel really matters. I send my boys to school each day and I find myself wondering if it’s even worth it. Especially for Aidan. They are spending 8 hours day learning things that aren’t meaningful for them (at least not now). Emphasis on academia and not much else. This isn’t the fault of the schools, their primary purpose is to teach academics. But is learning all the colors of the rainbow, 8+2, and how a cloud is formed affecting what really matters? It’s not. A reading disorder Autism is not, nor is it a science disorder, or a know your numbers disorder. It’s an interpersonal, interactional, social disorder. At its core, a communication disorder.

I don’t dream of the day my sons will name all the planets or know every element on the periodic table. I dream of the day Jojo tells me he has a friend or the day when Aidan plays with another child. I want my children to live happy, healthy lives, full of meaning and purpose, surrounded by those who love them and they love back.

So here they are, spending 8 hours in class trying to write their name and pick a the color red and yet that isn’t what really matters. Connections matter, people matter…they don’t have a grasp on that yet. Social relational skills are what’s most appropriate for them, what’s most important….everything else will stem from that, including academics. My focus has been off for years. Too much time I wasted trying to get my child to “pick red” on cue when that could have been used to get my child to relate to me instead. To SEE me. Too much time I have wasted not connecting with my children and motivating them to connect to me.

This isn’t to say that academics aren’t important, I am saying that in order for my children to even be remotely successful in the realm of academia they must first master social interaction and connecting with others. I need to motivate, inspire my lovely boys to cross the bridge from their world into ours before they will even begin to retain all of what has been taught to them.

I will never accept a prognosis of “never.”

You know what I have found to be the most upsetting and terrifying thing about autism, not only for myself but for others that I have talked to and observed? It’s not the diagnosis that devastates us, it’s the prognosis. The autism itself doesn’t scare me, doesn’t frighten me, doesn’t crush me. It’s all those things I’m told they cannot do, won’t ever be able to do, that wears on me.

I have never been the one to let others define myself or my children. I am a glass half full kind of person and I rarely ever lose hope. That is why I will not ever give up on my children. Why I will never find myself subscribing to a prognosis of life-long struggle and a bunch of “nevers.”

That is why I do what I do. Why I am constantly looking for ways to help my boys. Why I am at every conference, meeting, webinar, etc. Why I surround myself and my children with others who believe as I do. Why I give my all to my children and leave little for myself. It’s my middle finger to the prognosis I was once so afraid of.

I don’t see doom and gloom. I see possibilities. My children are capable of learning, loving, and living. All I see was that I had two choices, I could either accept a prognosis that depressed and devastated me, doing nothing for my children because apparently nothing could be done or I could say “f*ck that life of never” and do something for my children, to help my children.

As long as I draw breath, existing in a space of “never-dom” will never be good enough for my children.

May have found the one…

Communication app, that is. 
Think I have found our perfect communication app for OUR family. It’s called CoughDrop. It’s available on the Triple A devices (Android, Apple, and Amazon). You can customize the picture boards, make multiple boards, use your own images if you so choose to, and set your own speech to the pics. 
You set up a profile, state your primary use for the app and after you’re a subscriber you can share your login with other caregivers, therapists, teachers, etc. They then can create their own boards. You are able to create, edit, and save your boards on a desktop and then sync them to your other devices. They will then get the updated versions of your boards (or new boards). The app will also work offline. Whatever boards you have saved you will be able to use without a connection to the internet. 
To the nitty-gritty, the pricing. You get to test drive the app for free for 30 days. Afterwards, the subscription is $200 for a five year license or just $6 a month. I know I probably can’t swing the two hundred right now with school shopping and supplies draining me out, but I definitely know I can do 6 dollars a month. What is also really great about this app is that should you, for whatever reason not be able to afford your subscription down the line, they allow you to apply for a sponsorship to help you out. That is pretty awesome. 
Lastly, one of the creators/Ceo reaches out to you personally after you set up your account, or at least he did to me, and I’m still on the free trial. He checked to see how I liked the app, if I had any questions, and if I would like to set up a Web meeting with him to help me navigate through the app. We went back and forth via email for a little bit. He has a child with Autism who is nonverbal and the developer also has a child with autism who is also nonverbal. They get it. They understand the world of the communication apps and costs, etc, and they have their own kiddos to model the apps on. 
I feel like I’m doing an infomercial for them or something. I am NOT being paid, lol. I literally have tried dozens of apps. I just really like this app and how affordable it can be for families, the ability for others to make boards, the syncing options, the fact they assist those who can’t pay, how it’s available on pretty much every device (hello $50 Kindle, Amazon, cop one) and their reaching out to me personally. 
If you’re looking for a communication app, give CoughDrop a try. 
*****In the image I mixed real pics with images the app already has. I created the labels myself, and you can use your own voice or the computer generated voice. I opted for the computer voice. You can type whatever it is that you want the picture to say. For example, for the “tooth pain” image, it doesn’t say “tooth pain,” I have it say, “my tooth hurts.”*****

My Son Carried A Bottle of Juice…

​This may look like just a picture of a child carrying some juice, but this is a picture that means so much to me. This child of mine who has fought every single trip outside of the house, melted down at every single store, park, and museum we have attempted to visit this summer is carrying a bottle of juice. THIS IS BIG. 
He has not slept well in the past few months, and he screams for hours each day. He just hasn’t been his super happy self. I told myself that we weren’t going to give up on him, my husband said that we weren’t going to give up on him. I have worked so hard, everyday, and everyday I have felt like a failure. 
This day, my child woke up late because I figured out he isn’t comfortable in his bed and isn’t sleeping well, so I adjusted. Fixed the bed and even laid with him. 
This day my child didn’t fight me brushing his teeth because I was calmer and more patient with him. 
This day he got into the tub on his own because I didn’t try to help him in. 
This day he actually sat down in the tub because I realized he just wanted to be in there without brother. 
This day he used his communication book for the restroom because I have spent every single day prior to this one making sure he used it before he wanted me to do anything. I stayed with it, no matter how impatient I got, no matter how frustrated.
This day he went into the grocery store without incident because I let him walk more on his own, I let him push the buggy and pick his own foods. He wore his headphones and his chewy. He held my hand when he wanted to hold my hand. 
This day he helped me take the juice out of the car, I asked him like I always do, not expecting him to do so, I honestly never thought he understood the request but I ask anyways. This day, this picture of my son carrying a bottle of juice means the world to me. 
And to think this may have all started because we all got a good night’s sleep. 
Tomorrow we tackle keeping his shoes and socks on.

What Autism Community?

Y’all do know there’s a whole ‘nother side to Autism than just high functioning right?  Y’all do know that all your hoopin’ and hollerin’ about a celeb”s claims of curing Autism being a disservice to the community is bogus, coming from many of y’all?  Considering that y’all view Autism through the scope of your own experiences….HUGE disservice to this community.  I don’t see many of y’all help those of us who reach out for help, for understanding, for guidance.  You really only see a reaction from the community when someone steps out line, gets out of place, etc. (a celeb talking cure, a parent wanting a cure, or residential placement).  Autism isn’t all personality quirks and social awkwardness.  Autism’s severity scale isn’t governed by the amount of comorbid conditions one may have.  Autism can be overwhelming and isolating.  Many of you, because you only view Autism through the lens of your own perspectives are incapable of accepting that others don’t view it as some integral part of who we are.  And because of your limited scope, you condemn those who don’t share your views, and you hurt them with your words.  You don’t help them and you don’t guide them.  We can’t count on a community of support to help us because we have loved ones who reside on a part of the spectrum that is often forgotten about, or not cared enough about.  Take your pick.

Why so moved to act with fervent fingers of anger and a flurry of shared posts because a celebrity you don’t know said something you don’t agree with?  But not moved to act because a mom who has been operating on two hours of sleep with a child twice her size who is bruised from being hit by him constantly?  Why not moved to act because a dad is so overwhelmed by his child’s behaviors that his work is suffering?  Why not moved to act because a couple’s 8 year old is banging his head over a hundred times in two hours?  Why not moved to understand the challenges of the person with severe Autism and their families?  You’re quick to hear, “I would never put my child in a home, no matter how bad it got,” or, “there has to be something else wrong with him,” “you’re not trying hard enough,” “you have to reach him or her,” “think about how they (your child) feels,” “if you feel that way about your child, no wonder you’re having such a hard time with him,” etc.  Why not moved to act upon knowing that there are barely any supports and services as a child, but hardly any when they’re adults?  Why not moved to act knowing that there are an innumerable amount of families either going bankrupt for services their insurance doesn’t cover or they’re simply going without?  Why not moved to act because insurances are able to opt out of mandates to cover Autism services?  But y’all up in arms because a celebrity states her child doesn’t show any signs of Autism.  Again, no real help, no real solutions, no real support.

I vented enough.  Let me get back to doing what I do best, trying to find the best ways to not only help my boys, but help others.  Meeting with Hubs’ employer’s benefits coordinator about ABA services being covered, turned in my application for appointment to some disability councils with the state of Texas (fingers crossed, hoping I get one or both of them), getting my Master’s in ABA Therapy, and because my insurance doesn’t cover ABA, I schlep myself and these kiddos to ABA centers to talk to them about what all I can do at home for my kids, for free…I take what I learn and I pass it on to others who are in the same boat as we are.

I want to be about actual help for all individuals with Autism, not just those on the higher end of the spectrum.  I want to channel my energy and efforts into real change.

Just Give Me A Day…

Just give me a day…

where I don’t feel bad about hating your cutesy poems about how Autism has made your child unique and special.

A day where I can scream f*ck you to your declarations about how it’s made you a more patient parent, and enhanced your life in every way.

A day to scoff at your “Autism has it’s challenges, but I wouldn’t change him for the world” memes.

A day so I can feel it’s okay to cry about how hard it is.

A day to think about how Autism makes me feel without any of the “put yourself in their shoes” speeches.

Just give me a day…

to not think about my child feels, what he’s going through.  I don’t want to.

I need a day to think about how Autism makes ME feel.

I need a day to acknowledge that I actually have feelings.

I need a day to not concern myself with your claims of selfishness for caring about me.

A day to be upset my child has Autism.

Time to not think poorly of myself for succumbing to your proclamations of disservice to my child for not loving all that he is, as he is.

Just give me a day…

to admit to myself that yes, I find many of you high functioning parents and individuals annoying and not feel bad about it.  Love y’all, but at times you grate my nerves.

I need a day to realize that your condemnation and judgment is not right, it’s not okay, and you shouldn’t get a pass for it.

A day to realize I have a right to my feelings.

A day to rebuke the notion that simply because we all have struggles and challenges that that equates to sameness.  It doesn’t.

A day to realize what I already know, but stuff deep down, and that is that there are levels to Autism and that my son has it worse than many, and many have it worse than him.  It just is what it is.

A day to speak my truth into existence, if only for a day.

Autism is hard for me.

I’m surrounded by people, yet alone.

I’m filled with emotions I can’t even feel because they’re not considered appropriate to do so.

The pressure of Autism weighs on me constantly, give me a day to let it crush me.  I would rather pick up the pieces later, keep what I need, discard what I don’t, than continue to carry a load my spirit is too weak to handle.

Just give me a day…

to feel it all.

To grieve.

To mourn.

I need to feel it all.

I need to cry.

Just give me a day…

to not be strong.

I need a day to hurt.

Autism hurts.

Just give me a day…

to say that Autism hurts.

You got United Healthcare? You may want to check into this…

https://www.autismspeaks.org/advocacy/advocacy-news/united-healthcare-announces-aba-coverage-standard-benefits

As it currently stands, there’s an autism mandate for ABA coverage here in Texas, yet our insurer, United Healthcare (or better yet, our group plan under UHC) has chosen to opt out of the mandate leaving us bottoms out when it comes to obtaining this evidence-based therapy. I argue with them and others, made plans to figure how best to bring this issue of adequate coverage to the forefront and this news comes out. As far as I can tell, there is still some ways out of providing coverage for ABA therapy under United, they can still expressly exclude ABA therapy…but I hope they look at the market and the demand for such a service and see that this is worth it to so many families, including mine. I was going to start paying out of pocket for it, and I still plan on doing so, but I am hoping that our group plan chooses not to exclude this type of coverage….they raise our premiums every enrollment period, the least they can do is raise some coverage as well.

Off to do more research on this and prepare myself for more phone calls.

This is something that I am definitely passionate about seeing come to fruition, the accessibility and affordability of evidence-based therapeutic solutions for those with Autism.

 

Family Time x2

We recently moved to east Texas and while I’m not sure if I’ll enjoy our time here I cannot deny that it is absolutely gorgeous on this side of the state.  Being that my husband is from this area, he wanted to take us to Washington on the Brazos, which is a piece of history enclosed within a state park.  Lots of historical buildings and museums to check out within the park.  So being the nerd that I am, naturally I was excited.  My youngest who is a history buff like his daddy, was also excited.  He had been wanting to go for weeks and we finally found the time to make it out there.

Attempt One:  We get there around 4:30pm…the park doesn’t close til sundown (which isn’t until several hours later) so we think we have enough time to go check out some history.  Well, as soon as we pull into the park, Aidan starts up crying.  I brace myself for it to continue but I’m hoping that he will stop once we get parked.  It doesn’t.  We check to see if he has gone to the bathroom or if he needs to go to the bathroom.  No to both.  As soon as we try to cross the street to make our way to the visitor center, he falls out in the street.  Kicking, screaming, biting, hitting, rolling around, etc.  My husband had to physically pick him up (which is no easy feat being that he is like close to 100 pounds) and take him across the street.  He was still screaming and crying his little head off.  Snot crying.  I just wanted to grab our things and leave at this point.

People were staring and after about 15 minutes of this, a man came and asked us if everything was alright.  I can’t tell if he was asking because he was genuinely concerned or if he felt we were trying to kill our child and wanted to make sure we weren’t successful in our attempts.  I’m always on guard with strangers because I never know what they are going to do or say.   Eventually I said that I would take Aidan back to the car and just wait in there while everyone else could just go check out the center and the museum.  My husband said that he would do that and that I could go.  I reluctantly agreed and my son, sister, and I headed to the visitor center which was now closed because we were dealing with Aidan.  I was disappointed but I was hurt when I saw that my youngest was hurt because he couldn’t go in.  We ended up leaving and I made it a point to make my youngest feel better about the trip not going well.

Attempt Two:  I got up really early the next morning and I made it my mission to try to make this park trip a success.  So I got everyone else up…teeth brushed, contacts, change clothes…out the door.  I was counting on Aidan being still kind of sleep that he wouldn’t really have the energy to want to throw a fit at the park, and generally he is calm early mornings.  Yeeeaaaaah, didn’t work.  He pitched a fit at the park around 8 in the morning.

And the museum and visitor center was closed because it was the 4th of July, but you’re still able to walk around and look at the historical sites and buildings, you just aren’t able to go inside.  Aidan screamed and cried and didn’t want to walk.  It was just as bad as the day before…but my husband didn’t want to give up.  He wanted him (Aidan) to muddle through whatever was going on and make it through the trail.  I just wanted to hide.  Aidan did his usual “kick his shoes” off thing.  He did everything he could to get out of a situation he did not desire to be in.  And I probably contributed to this behavior by leaving every time he gets like that, but I just don’t have it in me to combat this anymore (or at least not right now).  We had to hold him up to walk, let him walk without his shoes, took tons of breaks, walked off without him (he wasn’t far behind, and he would eventually run to catch up with us), etc, but what we did not do was go back to the car.  It took him awhile, but he eventually calmed down and walked the trail.  It was a hot and exhausting morning, but I’m glad we toughed it out and stayed.  I didn’t get many pictures because of all the activity going on but I got a few.

There was a little playground at the park and while they didn’t slide down the slide, they did sit up there for a little while.

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The youngest Josiah, finally happy he got to at least walk the trail and look in some of the windows of the old houses.  Goofy faces always make me happy. 

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Me, hot as heck, and before Aidan decided he wanted to scream his way out of family time. 

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